Tough cookie

I was privileged to be Bryon's 2nd grade teacher and saw first hand EB at it's worst. Bryon took everything in stride as if it was an everyday occurance. He was protected by all the members of his class and they always pushed him to participate whether it was baseball, basketball or any other game that normal kids played. He was an inspiration to me and I did have the book which was autographed by Bryon and Lillian, but loaned it out to someone and it was never returned. If anyone knows of one I could buy to remember the story and remember a child that was such a blessing to me and all who came in contact with him. I am now a pediatric RN and have taken care of 3 children with EB and none of them were as bad as Bryon was when I knew him. I have heard in later years that the family had found somewhat of a cure for him and the last I heard he was in high school playing soccer. What a wonderful account of the LOVE OF GOD demonstrated in spite of all the pain!

Bryon has Recessive Dystrophic Epidermolysis Bullosa... the same exact condition my son has. RDEB is a rare skin disorder where the skin is so fragile a minimum scratch causes 2nd degree burn-like wounds, it is a devastating condition with no cure that does not improve with age.In this book Lillian describes in detail her life with Bryon from birth and beyond. It was a tough book to read because of the vivid images it brought to me, but a must to read for any EB parent and their loved ones.

"The heartwarming story of a small boy's rare courage and struggle with a rare skin disease that has caused pain and suffering for Bryon since birth. His story of strong faith in God's love is a lesson for all of us. His cheerful disposition is a tremendous contrast to the severity of his condition. When you read this story, you will realize that in the midst of sorrow, God alone can draw the sting out of every trouble and take the bitterness from every affliction." This is a wonderful book and you will be touched by it's story and how it will change your own outlook on life.